Attitudes, Migraines, and Melatonin

I am amazed at the things that will cause a 13 year-old girl to cop an attitude.  For Grace, it’s this:

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Grace struggles with maintaining her blood sugar, or, at least, she thinks she does.  We’re not sure.  Abilify affects the pancreas.  We do know this.  Well, if Grace doesn’t eat something every two hours, her mood tanks.  She becomes irritable, unreasonable, shaky, and then she starts crying.  If she eats candy, then you can forget the rest of your day.  Skittles will send her into a tailspin.  So, I’ve started packing thinkThin bars in her backpack as an afternoon snack.  With 20 grams of protein, a low glycemic index, and no sugar, it is the perfect thing for her to eat at midday.  For the record, they taste good.  They are not your mother’s 1970s weight-loss bar.  I would eat this if they didn’t have soy.  Sometimes I still sneak one.

Grace, however, almost has a fit over having to eat these bars! It’s like I’m making her eat alfalfa sprouts, raw mushrooms, and barley grass.  She tried to have a showdown with me this morning when I insisted she bring one to school.  She wanted to eat popcorn.  How is popcorn going to maintain her blood sugar? She stood in the living room and glared at me, as if I could’t sense that.  I’m sorry, I do live with two other teenaged girls, thank you very much.  They do, on occasion, glare at me from that same spot.  I’m not your friend, sugar pie.  I’m your mom! I’m trying to help you so holster that attitude before you shoot yourself in the foot!

In other news, I came across a meta-study regarding migraine and cluster headaches.  This is important so hear me out.  If you struggle with migraines or the dreaded cluster headache, then you will want to read this study or, at least, find out the results of my trial.  I have just come off a three month run of migraines/cluster headaches.  Yes, I do take Topamax to prevent migraines, but when I’m stuck in a period of clustering it doesn’t seem to do much good.  I take that back.  I’ll get 12 headaches a month as opposed to 20 which was the case pre-Topamax.  My neurologist finally prescribed prednisone in an attempt to stop the headaches altogether.  It worked for a week.  For months, I was awakened at around 3:30 AM every other night either with an aura or in the middle of some sort of headache–migraine or cluster.  I was starting to go crazy.  I started looking for alternative treatments.

According to this study, the use of melatonin before bedtime helped almost every migraineur in some way.  Blood tests revealed low levels of melatonin in migraineurs.  I gave it a shot.  I took 5 mg of time-released melatonin just as I was going to bed.  The first night I slept like a rock.  I could barely get up in the morning, and I was very disoriented the next day.  It was suggested to me that my state was caused by sleep deprivation.  That’s possible.  i, however, did not get a migraine.  The next night I slept well, and I woke up feeling more refreshed and less disoriented.  Once again, I did not get a migraine.  Last night, I took melatonin, and I did not get a migraine.  This morning, I feel a bit better.  One thing to note, melatonin can give you weird dreams.  This has been true for me.  I dreamed that I was surrounded by giant rabbits the size of Irish Wolf Hounds, and they were all trying to kiss me.  Weird…

Needless to say, if you struggle with migraines or cluster headaches, think about taking melatonin.  I was very dubious, but I was also desperate.  So far, it has provided me with three days of relief.  That’s the longest I’ve gone without a headache since July.

Resources:

The Therapeutic Potential of Melatonin in Migraines and Other Headache Types

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Forbidden Love

The week in sex was topped off with quite the awkward climax…er…yeah.

Last week, a friend emailed me a link to a series of books on Amazon with the caption: “Enjoy!” She tends to be snarky and sneaky so I am always a bit suspicious when she sends me anything.  Will I need to find some brain bleach? Probably.

My very wide and deep imagination, however, could not have prepared me for what I was about to see.

Dinosaur Porn

I will say it again.

Dinosaur Porn

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See? Ready for your Kindle!

If you’re not into herbivores, then you can always take a walk on the wild side with some hawt carnivore action.

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Of course, if you’re a born risk taker and crave the adrenaline rush, then I might recommend something like this.

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I was quick to inform my husband of this newly discovered genre, and he quickly found an interview with the two authors responsible for bringing us dinosaur erotica.  Apparently, T-Rex is the most sexually frustrated of all the dinosaurs thanks to his tiny arms–he can’t satisfy his own sexual needs by himself because he can’t, you know, reach! He must, therefore, find a human female to meet his sexual urges.  

Being a visual thinker, I began to try to imagine what a dinosaur/human tryst might be like.  Would they meet in a bar? What might a sexually frustrated T-Rex say to a gal? What about a big, burly Triceratops? After trying to explain purely human sexuality to Milly all week, I imagined trying to explain THIS to a kid.

“Well, sometimes a dinosaur feels things for a woman that he just can’t explain.  It’s a forbidden love really.  He just can’t find anyone in his own herd that does it for him.  And, well, you know that we talked about self-love, masturbation.  Your sister had to watch that video.  And, some dinosaurs just can’t know themselves in that way due to their tiny arms.  They need help, and they don’t want the help of their own kind.  They want the touch of a human woman.  Sure, they might be exiled, and, well, the other dinosaurs might try to eat the human woman if this is a group of carnivores, but…”

“Mom?”

“Yeah?”

“Dinosaurs and humans did not exist together at the same time.  What are you talking about?”

“….”

Sex Ed in Our House

Now that the can o’ worms otherwise known as sex has been opened in our house, I am being pestered nonstop, and not in a good way.

Milly is fascinated by babies and how they are made.  She has applied her autistic mind to the subject, and my sex life is under the microscope.  Every time she sees a man and a woman doing anything remotely sexual or affectionate on the tele she must now inquire about my sexual preferences.

We were watching a show, and a husband was kissing his wife’s neck.  Milly turned to me and said, “Dad kisses your neck.  Is that something you like? Does Dad kiss your neck often? Is that something you do when you lock the door? Neck kissing?” I just sat there.  I think my mouth was hanging open.  A bird could have nested in my throat.  She just kept talking.  “Do you suppose they might have sex? I wonder if they might make a baby.  Do you like sex?” While a bird was building a nest in my gullet, my eyes just fell out of my head.  I have discussed sex and sexuality with three other girls none of whom have an autism spectrum disorder.  They never asked for specifics.  This girl is altogether different.  I had to get myself together.  She was looking at me expecting an answer.  I knew that I had to say something! “Milly, I want you to ask questions, but I am not going to discuss my sexual likes and preferences with you.  It’s just not something that is appropriate.  You are ten years-old.  I think it’s enough that you know how babies are made, how they are born, what a man and a woman do to conceive a baby, and what sex is.  What your dad and I do when the door is locked is simply not for you to know.  That’s why the door is locked.  We are adults, and you are not a part of that relationship.  That sort of information would be too heavy for you to carry and is simply not for you to know.”  Being who she is, she simply said, “Oh, okay.”

As soon as that conversation ended, Eadaoin dramatically entered the room and declared, “Ermigerd, health class was so weird today! We watched the weirdest movie!!!!” I was intrigued and fearful at the same time.  Not being one to shy away from a challenge, I asked, “What did you watch?” Eadaoin almost shrieked, “My health teacher very enthusiastically made us watch a movie on masturbation.  LIke, eeeeew!” My husband and I tried not to laugh, but we couldn’t help ourselves.  “Wait, they showed you a movie about masturbation? What is this? Sex ed in the progressive North? Back in Texas we were just taught to fear the penis.  That’s it.  The penis is bad.  It is to be feared above all else.  If you see one, then run.  Run away.  Don’t touch one.  Don’t be near one.  Don’t look at one.  Better yet, don’t spend time with anyone who actually has one just to be on the safe side.  Protect your vaginas, ladies! Protect your vaginas.  Keep your hymens intact!!!! They’re actually teaching you about masturbation?” I was shocked.  My husband was trying desperately to restrain himself.  “So, what did this film depict exactly?” he asked, trying to look serious and sincere.  Eadaoin inhaled deeply and said, “Well, first of all, it was hosted by some gross boy.  Like a 17 year-old or something.  I mean, why? I’m sorry, but I am just not all that comfortable listening to some dude talk to me about….THAT!” I stood in the kitchen biting my lip.  My husband stood next to me nodding his head, turning all shades of red, trying desperately not to explode from holding back his laughter.  “You guys, the worst thing though was how the video ended.  This gross, gross guy was standing there looking at us with this creepy look on his face.  And, he said right before it ended, ‘I have some time right now…’ like he was gonna run off and, you know, DO IT!” That was the moment that my husband lost it.  I was stunned.  While my husband was practically rolling around on the kitchen floor, I had to ask just to be certain, “You mean the dude actually ended the video with the implication that he was going to….” My husband interrupting, “…crank one off!” He continued to laugh, tears streaming down his face.  Eadaoin shrieked, “Dad! EEEW! You are so gross!” I just stood there taking in the scene.

“What else are they teaching you in health class?”

“Well, Mom, there’s that video about the fifty nifty sex terms, and then there was that one about the freshman girl sleeping with the senior guy who then started sleeping around. Uh, hmmm.  What else? I’m thinking.”

I used to think that putting a condom on a banana was scandalous.  Sitting in a room full of adolescent boys watching another adolescent boy teach me about masturbation?

I would just die.

I’m so glad I’m 41.

I’m just sayin’.

She Knows

I just got off the phone with my husband.  We get to go home! This is cause for celebration.  Grace is not having seizures.  The neurological activity that she is experiencing is related to migraine activity so that’s the next step in her treatment, but that wasn’t what my husband and I spent our time discussing.  Apparently during my absence, Milly just had to know exactly how babies were made.  In the car.  Alone with her dad.

I am filled with a schadenfreude-like glee that she decided to pursue this line of questioning with him because I’ve had The Talk with every other girl in our family.  It’s about time he suited up to take on The Birds and The Bees.

“So, Milly just had to know how babies were made last night.  Like she really had to know how the sperm made it to the egg.”

“Really? What did you tell her?”

“Well, I’m not gonna lie! I told her!”

Snickering with delight, “I wanna hear what you said!”

“I just told her that the penis goes into the vagina, and that’s how it happens.  Then, sperm leave the penis and swim to the egg.  She’s a little horrified that she’s got eggs in her body.  I think she feels like a bird.”

“What did she say then?”

“Well, she asked if people did this naked.”

“What did you say?”

“I said yeah, of course! That’s the best part!”

“You did not!”

“Hell, yeah, I did!”

Busting a gut laughing, “What did she say then?”

“She asked if we did that naked.”

“Of course she did.  Oh Lord…”

“I told her that we did it at least four times because she and her sisters are here! Oh, and Eadaoin was in the car while this was going on.  I might have left out some stuff, but I covered the important details so I’ll let you flesh out what I missed.”

“Flesh out? Really? PHRASING!”

Tears were running down my face.  The thought of my husband telling Milly that we have naked sex is almost too much for me.  The thought that she now knows exactly what that means is beyond! She’s a literal thinker! She’s an Aspie! Every time our door is locked from now on I can safely predict that she will dramatically and very loudly ask, “Are you naked? Dad, are you putting your penis into Mom’s vagina? That is just so disgusting! I am never doing that! I am horrified.  GROSS!”

So, this is what happens when I leave the house!

In The Hospital

Grace and I are hanging out in her room.  She’s been admitted for a VEEG (video EEG) so she can’t leave her room except for one hour a day.  She needs to be monitored at all times.  This is a wonderful place.  It’s a specialty hospital so the doctors here are highly specialized.  We are in the Neurosciences Unit.  There is a tiny girl in the room next to us with the sweetest voice.  She cannot walk on her own, and she’s on oxygen.  I’ve not seen her parents so the nurses are in the room with her most of the time playing with her and helping her walk and exercise.  She doesn’t cry.  She must be very brave.

The Child Life Specialists invited Grace to the common room last night for crafts.  She had been saving up her time to be off the monitoring for the evening so she was excited to actually walk around! We sat at a table with a boy with cerebral palsy.  He was born at 23 weeks gestation and had endured 14 surgeries to date.  He was in sixth grade.  His dad, John, was conversational and down-to-earth.  When you’re in a place like this, I notice that all the parents are quick to ask what’s wrong, and there is no judgment.  John asked me directly why Grace was here.  So, I told him.  Grace was being looked at for possible seizures, but her doctor was also trying to track vascular activity in her brain.  I explained her current diagnosis, and he just nodded.  He didn’t look at her as if she had a contagious disease.  He just said, “I bet her migraines are related to her schizophrenia.  That’s a brain thing, I bet.”

John drives a truck for a living.  He isn’t a scientist, but his conclusion was the closest thing to accurate that I’ve heard from anyone.  It’s amazing what people are capable of when they aren’t afraid.  I met his wife a bit later, and she looked utterly exhausted.  As it turns out, they were from Indianapolis.  They had just driven ten hours to get here, and they didn’t know how long they would be staying.  Their boy was in line for yet another surgery.  I stopped and looked around at all the children present for craft night.  Grace was the highest functioning child there.  Every child was strapped into a wheelchair.  Most were barely conscious.  I looked at the two parents from Indianapolis, haggard from road weariness and worry.  The suffering that families know.  It was overwhelming.  I wanted to do something about it, and I couldn’t.  So, I chatted with this family and their son.  I asked them about their trip and their story.  How were they doing? Where were they staying? Women are much quicker to discuss their emotions.  Men often don’t want to go there.  They want to do something.  Stay active.  Avoid feelings of helplessness.  I’m like this.  I will discuss feelings, but, when it comes to my kids, I would rather do than sit.

We were discussing the Ronald McDonald Family Room here in the hospital–a wonderful resource–when I saw John disappear.  He came back with two cupcakes for Grace and me.  It’s in this act that I see the character of people.  Even exhausted from driving ten hours and worried about his son, he was generous.  He still thought about others.  This is really how we keep our humanity and empathy intact in the middle of caring for special needs kids.  We maintain relationships with other people and try to avoid being self-involved.  In a crisis, it’s hard to avoid self-involvement.  You only have so many resources to go around, but, as a lifestyle, living generously is the antidote to that strange sense of entitlement that tries to creep in when unusual needs and hardship settle into your family.

Grace is currently watching “The Muppet Show”.  She had her blood drawn this morning.  I was told that her neurologist has indeed decided that she is testing her for mitochondrial and metabolic disorders.  We were told that it’s very hard to diagnose mitochondrial diseases, and we may be referred to a mitochondrial specialist.  We may be at the beginning of our journey there.  They have asked me a lot of questions about my own migraine treatment since I have chronic migraines as well.  Grace is plagued with almost intractable migraines at this point.  I am hopeful that they will attempt to treat her.  She is missing school.

I don’t feel fearful.  I feel grateful.  I feel so thankful that we have resources in our city.  We don’t have to drive ten hours to find help.  It’s in our own backyard.  That was the last thing John and his wife said before taking their son back to their room: “You’re lucky.”

We are.  In many ways.

Unexpectations

I had a bad parenting moment.  Yep.  I did.

Grace and Eadaoin have the same birthday just two years apart.  Grace was born two days past her due date weighing in at a whopping 9 pounds 12 ounces–yeah, it hurt–and Eadaoin was induced three weeks early after an emergency amniocentesis–yeah, it hurt.  They don’t like sharing a birthday.  I don’t like to listen to them complain about sharing a birthday.  So, this year I suggested that they split the whole thing.  This weekend Eadaoin could celebrate turning 15 with her pals, and next weekend Grace could celebrate turning 13 with her friends.  Everyone agreed.  Détente achieved.

What did Eadaoin, the Cyclothymic Wonder Girl, decide to do? She hatched a plan with one of her besties to have a party at her best gal pal’s house without sharing the deets with me.  All I heard was, “So, Francine’s mom said it would be fine if we had my birthday party at their house since our house is kinda small, and, you know, Grace and Milly are sorta unpredictable and stuff.  I’m just gonna make cupcakes and stuff, and we can all decorate ’em at Francine’s house, and her mom is cool with that.  I’ll invite the Herd over at 4, and it’ll be awesome.”  She managed to tell me that in little bits and pieces throughout the week.  My response? “Wait, you’re going to invite just a few girlfriends to Francine’s house on Saturday and decorate cupcakes?”….”Sure!”  That foreboding feeling should have told me something.

Friday evening Eadaoin approached me.  “So, Mom, we need to go to the store.  I need you to buy me some stuff for my party.  I need a few frozen pizzas.  And, some stuff for my cupcakes, but I’ll make the cupcakes.  Oh, and you need to be there, too, since we’re hosting the party…and stuff.”

Suddenly, it dawned on me.

“Eadaoin, I need you to tell me the whole truth here.  How many people did you invite to your party?”

“Ten.”

“You invited ten people to your party that you are hosting at Francine’s house?”

“Yeah…”

“I see.  And, I am, of course, expected to be there because really I’m responsible for making sure it all goes well because I’m the hostess behind all of this.  You do realize I don’t know Francine’s parents, right?”

“….”

“Have you thought this through? We will need more than two pizzas.  How many boys are coming?”

“Four.”

“I see.  Did you plan on beverages?”

“Uh…I forgot.”

“Right.  You will need drinks.  What about paper plates, napkins, and trash bags.  We will have to clean it all up.”

“I didn’t think about that.”

The thought of hostessing a party of ten teenagers at a stranger’s house made my blood run cold.  I thought I was going to lose it.  When I get angry I don’t yell.  I talk quietly.  Eadaoin became pale.

“I can cancel it, Mom.”

“No, you will not, but you needed to talk to me.  Why did you do this without talking to me?” I asked trying to stay calm.

“I thought you would say no.”

“So, you essentially asked another mother through your friend? Why did you do that?”

“Because of Grace and Milly! They can’t tolerate noise! They have needs! I…,” she began weeping.

“You are not responsible for them! That’s my job! Do you understand me? You ask me for what you want! You don’t go to another parent!” I emphasized.

“No! I’ll cancel it.  I’m gonna cancel it! I’m sorry.  I’m canceling my party…” she spiraled out of control.

It wasn’t pretty for a while.  There was a lot of negative talk like, “Everything I plan goes wrong,” and “I should have known this would happen!” I had to reel myself in and talk her off the ledge.  She eventually agreed that canceling her party was a very bad idea, and I said that we would have her party at our house.  Her dad would take Grace and Milly out while her party was going on.  We would do our best.  It was all very last minute.  I had no idea on Friday night that I would be throwing a party for my daughter the very next night, but it worked out.  We had a house full of eleven high school freshman last night, and they all thoroughly enjoyed themselves.

To calm Eadaoin down after her meltdown on Friday night, my husband and I grabbed some dinner before picking up party necessities.  While we were eating, we were greeted by a flash mob.  Of all things! A flash mob! Fifty or more people danced like idiots while we ate our dinner.  It was quite the way to end the evening.

After it was all said and done, I asked Eadaoin what she learned.  “I need to ask for help.  Also, I’m not responsible for my sisters.”

Yep.  I suppose that makes it worth it.

What are the chances of her remembering that?

Dr. Fabulous

Grace and I finally met with our third neurologist.  Her psychiatrist insisted that we get a second, or really third, opinion.  We have waited for this appointment for months! We went to one of the premier specialty centers in our region.  One can’t just make an appointment.  I had to speak to a gatekeeper.  The gatekeeper sent me to a nurse.  The nurse questioned me.  The nurse then sent me to the neurologist’s nurse who questioned me who then spoke to the neurologist.  The neurologist then agreed to see Grace.  I was so relieved.  This is a facility that is known to treat “zebras”.  It’s a funny term, but it means that if all people are horses there are bound to be a few zebras in the mix.  Grace is a zebra at this point.

Dr. Fabulous spent two hours with us.  I have never seen such a thorough neurological examination.  She did not act like a neurologist either.  She was, well, normal and kind! Not at all clinical.  She seemed to like humans! Such a refreshing experience.  I will spare you all the details, but there is a plan and an idea percolating in the good doctor’s head.

Does Grace have a clear-cut case of childhood-onset schizophrenia aka schizoaffective disorder-bipolar type? Maybe not.  I know, I know.  I’m nervous.  Because Grace is having such debilitating migraines–oh yeah, we got a firm diagnosis on that, y’all–there might be more to her presentation than anyone has considered! Can someone please give me the Fist Bump of Victory on that? I have not been overmedicating my child.  Dr. Fabulous said that she is clearly having migraines–Transformed Migraines to be clear.  So, she’s increased her Neurontin to 900 mg as a preventative measure, and we need to bring in a pharmacologist to talk about abortives.  She wants to use a triptan, but triptans deal with serotonin.  Grace is already on so many drugs that deal with serotonin.  She doesn’t want her to get Serotonin Syndrome.  So, the jury is still out on how to abort these migraines, but, heck, we’ve got a diagnosis.  That’s something.

Remember my post on Ehlers-Danlos Syndrome? Then, the possibility of seizures due to these “events” she’s been having around flashing lights? Then, Grace’s GI issues with gluten? Then, of course, there’s the Restless Leg Syndrome and the intermittent muscle cramping and her strabismus.  When Dr. Fabulous put it all together she said, “I have a lot to consider, but I’m leaning towards some kind of mitochondrial disease.”  Combine that with her neuropsychiatric issues and the cognitive decline, and it starts to make sense.  It’s not a bunch of health problems in one little body.  It’s one underlying problem causing a lot of “symptoms”, if you will, the psychiatric issues included.

I feel stunned.  A mitochondrial disease.  So, Grace is being admitted to the hospital for three days for a VEEG and further testing in mid-October.

I don’t know about you, but I feel like I’m on a roller coaster! But, wouldn’t it be nice to have an answer? A real answer?!

Resources:

What is Mitochondrial Disease?